Spirit Dancer,
My heart goes out to you and yours. You must be in that proverbial rock and hard place.
Keeping the separate lists sounds like a great idea. I found myself going around to the nurses station before I go see my friend Milana, and reviewing what has and has not happened. She put me down as #2 on her Advanced Directive, and # 1 to get and give info to the Doc's. I have been calling when not there, as my visits and or not visiting cause her to get into such a rage it became unhealthy for her for me to be there all the time. She is agitated all the time now, no matter which anti-anxiety meds they give her, and is lashing out to hit at the nurses, and at her sister and I.
Found out last week Milana's path report in June was Stage 4 Lung Cancer, and we were told it was espophageal CA. She Still has not had chemo, or radiation treatments since the accidental trach event in July. She went from Acute Care hosp and is now in a nursing home. Next week she goes to UCI to have the PET Scan repeated, since they don't want to start radiation based on the scans done in May. Hopefully they will start treatment soon, as her.
Wish we could find the magic elixir to wipe out this fucking disease.
.
Love to you all,
Tommi